Welcome

Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

Author
Topic: Have I won the lottery? (Read 4944 times)

My latest labs have shown a continued drop in VL despite not taking any meds. CD4s went down too but my doc is dismissing that as 'regular fluctuation'. The resistance test shows that I have got wild type so its not some 'less virulent but resistant to 3TC' strain. Doc says I got some special gene that's supressing the virus and I probably wont need meds for a very long time. Yay!. Although I am abit worried that my doc is basing his advice about me taking meds on VL instead of CD4. I am personally not keen to start unless I have to. Does anyone else think its a good idea to delay taking meds because of low VL?

There are many different opinions out there regarding when it's best to start - and for someone like you there are even bigger question marks hanging over the issue.

If you are a Long-Term Non-Progressor (LTNP) or even an Elite Controller, you can enrol in a study that looks at people who fall into these categories. Many scientists believe that LTNPs and Elite Controllers may hold some of the keys to unlocking a cure.

Personally, I was what is termed a Long Term Slow-Progressor. This means that while I always had a VL that was somewhere between 6,000 and 30,000 or so, for a very long time I also had CD4s well over 500. I had hiv for fifteen years before I started meds. I would have like to have started maybe a year or two sooner than I did, but I was very happy that I had as many med-free years as I did.

Of course when I was first diagnosed the newer meds weren't available and the meds that were available had more side effects, and some had long-term side effects that some of our Long Term Survivors still deal with today, despite being off the older meds for years.

If I were you, I'd do a lot of research on what it means to be a LTNP or Elite Controller (google them), I'd look into the possibility of joining a study instead of going on meds, and once I understood a bit more, I'd have an in-depth discussion with my doctor about it all.

With the numbers you have, you do have the luxury of time to thoroughly investigate all your options.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

If you are a Long-Term Non-Progressor (LTNP) or even an Elite Controller, you can enrol in a study that looks at people who fall into these categories. Many scientists believe that LTNPs and Elite Controllers may hold some of the keys to unlocking a cure.

I thought my specialist would start recommending me these trials. He did mention something but wasn't pushing it so I thought maybe I'm not the ideal Elite Controller (are they UD?).

Trials : they will do something with you (aka intervention) , e.g. a med or placebo given my mouth

Study: they will collect blood and play with it: this does not affect your body, it just takes some of your time. I am in one, so I get to go to a lab on a regular basis for blood samples: it is like donating blood or other generous things you can do

If there is a researcher or a Univ. doing a study (not a trial) it is a good idea to help. I am learning a lot also by talling to the researchers, which is a bonus

I'm curious how treatment recommendations change, based on a very low vl, yet meeting the markers to initiate treatment? Well, at least U.S. guidelines and I thought below 500 was becoming the recommendation in other countries.

If your CD4 is below 500 and CD4% is 20%, then does the low vl really change things that much? That is a question and not a statement, because I have no idea.

I'm curious how treatment recommendations change, based on a very low vl, yet meeting the markers to initiate treatment? Well, at least U.S. guidelines and I thought below 500 was becoming the recommendation in other countries.

If your CD4 is below 500 and CD4% is 20%, then does the low vl really change things that much? That is a question and not a statement, because I have no idea.

Spot On! That was my original question in the first post. I was abit apprehensive that the doctor based his advice about taking meds on VLs AND CD4 data rather than the standard CD4 data alone. So I would appreciate some thoughts on this. Has anyone had such a low VL and low CD4 count that nearly got them AIDS?

Eric48, the reason why my CD4s jumped from 15% to 20% is because I moved to another country (and hence another clinic). So the lab machine used to analyze those numbers maybe using different methodologies. The first two CD4% are from the first clinic, and the second two are from the second clinic so in that sense, both are consistent. But you are still right to say that my immune system isn't deteriorating.

My next check up is in 6 months time (either because the Doc is that relaxed, or just planning to save some money on behalf of the NHS). Maybe things will become clearer with 3 VL data points...

Of course, it is recommended that you have test labs in same lab and even at same time of day... If you 've moved location, then, of course...

Well... I could go into the technicalities, but ...

Immunologically, you are in a green zone. Not the greenest, but stillVirologically, you are in such a green zone that you may want to wear sun glasses. I mean: less than 400: this is virologic control by all means.

Have you won the lottery ?

The question is naive and funny, and the answer not less.

Have you won the lottery ? YES

Your virus in not less virulent than that of others which is why you will still be playing safely (as you should always have had)

So what makes the VL so low ? Well the most likely scenario: your immune system mounted an attack against the virus by generating antibodies randomly: we all had thatLuckily yours found a combination that matched the virus before it had a chance to mutate. May be the virus did mutate but the immune system responded. In the arm race, the virus (which usually wins) is not winning... yet ...

A new mutation and a missed response and you're out. Shit happens... but not always and not on good people

The neutralizing antibodies are mounted in most of us, but not in sufficient quantity and matching combination to work efficiently and for ever. I have them, you have them. Yours match the virus in its current state better than mine does.

In order to mount this response efficiently, the immune system needs to expand the CD8 compartment. The CD8 compartment is inflated, thus the CD4 compartment is compressed (at this time). This is most likely going to go on , fluctuating, until... it does not

So why is you CD4 dept compressed ? Because Mother nature is at work

Let her work !

Everyday, actively, you immune system is generating new combinations that may match the current virus better

Every day, but, not that much, at such a low VL, the virus is trying the same: generating a mutation that would escape (take over)

Who is the winner ?

Obviously you as a patient.

Do you need help to control the virus ? and what for ?

You still want to keep a close eye on it.

Learn your meds options, etc. check that VL closely. and be ready to the chemical fight in case the immunologic fight turns bad.

You will have plenty of time to build up a chemical (pharmaceutical) response

So yes you won the lottery... So why not take a big breath and say yes, someone HAS to win the damned lottery.and I am one of these

If I were in yours shoes, a Primary Controller, I 'd keep a closer look at that VL.

Depends where you live...

Where I live, you DO NOT need a script to get a VL.

I pay fullfare : $30 ! A bargain !

You may want to call some independent local lab and ask them if you can have a VL without script.

If they say yes, then , you are no more dependant on Doc

Most likely, they may not give you the price over the phone... They will have you come in, fill the paper work, then hand you the bill. Should not be that different from mine

It is worth it

Rather than worry in front of computer/google, get those extra VL test done at your own pace

A complete VL+CD4+CD8 is $100

Besides, I would be interested to know if, in socialized health care like the NHS, there is still enough room for manoeuvre

I'd probably hop on meds given these numbers or if the CD4 number or percentage drops when monitoring closely.

My reasoning is the large studies showing increased morbidity and mortality for all reasons for those with CD4 count below 500, even with viral suppression. Your numbers already put you at stage 2 by CDC definitions (CD4 200 - 499, and CD4 % between 14 and 28). CD4 % below 14 is also categorized as AIDS now. It's just a label, but the numbers don't lie as far as risk in the different HIV stages.

I personally wouldn't play the science experiment angle, since you may have excellent CD4 recovery after letting things get worse, but you may not.

Thanks for all the perspectives here. I appreciate it. I am probably going to ask my doc if he can approve an additional VL test in between the biannual visits. And then judge from there. In terms of playing a science experiment, I have no qualms. If they DO want my blood for studies and etc, I would gladly donate pints of it.

Thanks for all the perspectives here. I appreciate it. I am probably going to ask my doc if he can approve an additional VL test in between the biannual visits. And then judge from there. In terms of playing a science experiment, I have no qualms. If they DO want my blood for studies and etc, I would gladly donate pints of it.

Sorry my bad, that's not the science expirement I was talking about. I just meant not being in a study/trial and letting things go without good monitoring just to see what happens vs. making changes to improve things. I'd give all the blood a study wanted too.

Sorry my bad, that's not the science expirement I was talking about. I just meant not being in a study/trial and letting things go without good monitoring just to see what happens vs. making changes to improve things. I'd give all the blood a study wanted too.

People in studies (and trials) are often more closely monitored than patients who aren't in studies.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

People in studies (and trials) are often more closely monitored than patients who aren't in studies.

Yeah, I was initially referring to Eric's monitor and pay for labs yourself science experiment approach, poor choice of words. The more data we get the more it looks like earlier treatment at higher CD4 levels makes sense, especially with the newer less toxic meds, but only more time and studies will tell.

Yeah, I was initially referring to Eric's monitor and pay for labs yourself science experiment approach, poor choice of words. The more data we get the more it looks like earlier treatment at higher CD4 levels makes sense, especially with the newer less toxic meds, but only more time and studies will tell.

Thank you for the clarification. I did wonder if I misunderstood you.

For the record, I don't agree with a lot of Eric's recent advice. He often talks in riddles and refuses to divulge much about his situation, he only gives us little bits of the picture. It seems to me as though (looking at the incomplete picture that is forming) Eric rarely sees his doctor, but orders labs off his own back to interpret himself, and I'm also starting to wonder if he doesn't order his own meds from somewhere too. It's difficult to tell going by his convoluted, riddle-filled posts. His recent constant promotion of his Twitter account doesn't help matters much either.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts